ME/CFS
Outcome unclear
ME/CFS: chronic fatigue and pain; bedridden after too-high levothyroxine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- many years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I've had chronic fatigue and pain for many years. No diagnosis, however symptoms are in line with CFS and Fibromyalgia.
In context ↗ - At worst: Severe
too much levothyroxine made me extremely weak/bedridden + insomnia, headaches and anxiety.
In context ↗ - Began after: nothing they could name
I've had chronic fatigue and pain for many years.
In context ↗
Summary
They reported chronic fatigue and pain for many years without a diagnosis, in line with CFS and fibromyalgia, and sensitivity to most daily supplements; vitamin D and magnesium at night were tolerated. Sleeping more than eight hours or too little both made them feel worse. A too-high levothyroxine dose made them extremely weak and bedridden with insomnia, headaches and anxiety; the dose was later lowered.
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What they tried
Also tried
Their words about each treatment
- Vitamin D · Not said
I've been taking them for years and they don't seem to bother me.
In context ↗ - Magnesium · Not said
only take Vitamin D, Magnesium at night daily. I've been taking them for years and they don't seem to bother me.
In context ↗ - freeze dried beef organs · Not said
I am able to take freeze dried beef organs 2 -3 times a week and can't tolerate them taken daily even in small doses.
In context ↗ - levothyroxine · Much worse
My TSH came back too low and my dose was lowered, too much levothyroxine made me extremely weak/bedridden + insomnia, headaches and anxiety.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| — | chronic fatigue and pain for many years, no diagnosisI've had chronic fatigue and pain for many years.In context ↗ | Not stated |
| by September 2026 | too much levothyroxine: extremely weak, bedridden, insomnia, headaches, anxietytoo much levothyroxine made me extremely weak/bedridden + insomnia, headaches and anxiety.In context ↗ | Severe |
| September 2026 | thyroid dose lowered after TSH came back too lowMy TSH came back too low and my dose was loweredIn context ↗ | Not stated |
Adverse events
- Beef organ supplements (Heart & Soil)“Almost anything taken daily ends up making me feel worse (more tired, achy and very depressed)” In context ↗ Made symptoms worse
- Beef organ supplements (Heart & Soil)“I am able to take freeze dried beef organs 2 -3 times a week and can't tolerate them taken daily even in small doses.” In context ↗ Made symptoms worse
- Levothyroxine (Synthroid)“too much levothyroxine made me extremely weak/bedridden” In context ↗ Made symptoms worse
- Levothyroxine (Synthroid)“too much levothyroxine made me extremely weak/bedridden + insomnia, headaches and anxiety.” In context ↗ Insomnia from treatment
- Levothyroxine (Synthroid)“+ insomnia, headaches and anxiety.” In context ↗ Side effects
- Levothyroxine (Synthroid)“+ insomnia, headaches and anxiety.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I've had chronic fatigue and pain for many years.
In context ↗ - Sleep problems
The longer I sleep (more than 8 hours) the worse I feel.
In context ↗ - Headaches & migraine
headaches and anxiety
In context ↗